Trigger warning: Terminal

  • 4 replies
  • 88 subscribers
  • 66 views

Gosh I didn't think I would be writing this. i visited this forum 18 months ago when my Mum was first diagnosed with throat cancer - right side. She had all the usual treatments, discussed here, had adverse reactions to all of them and had a torrid time as everyone does but importantly she was cancer free at the end.  We enjoyed a year of knowing that but also helping her navigate the scars all the treatment had left behind, both physically and emotionally. 

Then by chance she was offered an MRI as part of a trial for patients post treatment and 5 weeks ago the cancer was back - in her tonsil and although stg 2 and curable via the same treatment as before, it would leave her with such poor quality of life and swallow issues (dangerous ones) that she has declined this option. She was offered palliative radio but would leave the same effects. So long story short she has chosen no further medical intervention. No treatment.

Her prognosis is approx 12 months and I just cannot get my head around all this - 5 weeks ago she was fine, today to look at, she is fine but I am being told that she likely wont see another spring after this one?

So I guess i am here asking, has anyone been through this with a relative before? My Mum is 68 and I feel too young to lose her Disappointed

I want to understand what I'm in for, will she just start fading away? Everything was so positive and now its a nightmare. I am trying to focus on the current day and being positive but I need to know.

  • Oh  I’m so sorry to read your sad news. 
    I’m hoping somebody will pop on to hold your hand. 
    Can you have a word with your mum’s oncologist regarding how her disease will progress? It’s not just fading away so you’ll need some sort of trajectory so that you can put help in place. I’m thinking of GP, district nurse, hospice ( including hospice at home which was fantastic with my mum in law) 

    Macmillan have a forum for those of us supporting somebody with incurable cancer. 
    It’s here 

    https://community.macmillan.org.uk/cancer_experiences/supporting-someone-with-incurable-cancer-forum

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Such sad news. I'm so sorry.

    My only experience was my mum with a rare ovarian cancer. She was 72 which is too young. The hospice care was amazing and they will be there for your mum and you. That will be months away, so yes, request information on what to expect over the coming months, and hopefully you are able to make memories over the next few months.

    Becky

    xxx

  • Firstly hugs for you.   I am so sorry to hear of your Mum's cancer return.

    I was primary carer for my mother (return of breast cancer and mets) and more recently my uncle during Covid (return and mets from nasal cancer although different clinical issues lead to his death before the cancer did).

    This is not an easy time for either of you - or the rest of your family.  I am glad that you seem to have accepted you Mum's decision.  It is very important that you do.  It will not be comfortable but in the end you will feel at peace because of that acceptance.

    You probably need to be thinking about practical issues right now - what your mother wants in terms of care and celebration of her life. 

    Try to make memories with your mother and if you have the opportunity record what she says about he life.  I have written records from both my mother and father - they are invaluable.

    Make sure your GP is on board and sees you as the primary carer (if appropriate) who they can openly discuss things  with.  Are Lasting Powers of Attorney in place?  If they are they help greatly.  If not then maybe you have time to do them.  You can easily DIY them as the Government website hand holds you through it.  You do not need to pay out large sums of money!

    Both my mother and my uncle ended up in a hospice and both said it was the most wonderful of places before they died.  The hospice provided care and compassion and had time to sit and talk to them unlike most hospital wards.  They are also looking after the family as well as part of their care.  Hospices outreach to the home as well.

    Unfortunately, the reality of the last stages of life are generally not pleasant to those around your Mum, although many clinical staff will say that for her it is nowhere near as bad as it feels for you.

    Take all the help you can get.  You have to look after yourself so you are there for your Mum.

    I hope that was not to blunt, but I speak from my lived experience and what helped me and ultimately the people I cared for,

    Once again hugs and stay with us for compassionate support.

    Peter
    See my profile for more details of my convoluted journey
  • Hi  am so sorry to hear about your mums progression and diagnosis. I can’t add to what the others have said . But I can offer my sympathies as both my mum 78 and dad 63,died due to different  cancers. Both before we had good hospice care either at home or in the hospice. Take these months and try ti make long lasting memories. 
    hugs 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/